Belfast Telegraph

I lost my lovely baby but now I want to help other children

UTV features editor Jeanie Johnston was devastated in 1991 when her four-day-old son conor died from a rare heart defect. Here, she tells Karen Ireland about the heartache time hasn't healed - and the amazing research financed by heartbeat, the charity of which she is patron.

UTV features editor Jeanie Johnston was devastated in 1991 when her four-day-old son conor died from a rare heart defect. Here, she tells Karen Ireland about the heartache time hasn't healed - and the amazing research financed by heartbeat, the charity of which she is patron.

A few months ago I met a three-year-old boy with exactly the same congenital heart condition which my baby son Conor had.

That remarkable wee boy is alive today thanks to lifesaving surgery - surgery that wasn't available 14 years ago.

It hit home to me, then, just how fundamentally important research is and the importance of the work of Heartbeat, the charity of which I am now patron.

Heartbeat works closely with the Clark Clinic at the Royal Victoria Hospital, Belfast, raising vital funds and awareness about heart conditions in children.

They have made tremendous medical inroads over the years and I am extremely proud to be associated with the organisation.

But, of course, I didn't need that meeting or anything else to remind me of Conor because he is never far from my thoughts.

I don't think you ever get over the death of a child.

All these years later I still get very emotional when I talk about my baby - but I do talk about him. I want to remember him and it always helps to talk.

He was a beautiful baby. The first 24 hours of his life I was blissfully happy. I had a five-year-old daughter, Fiona, at home and a wonderful son to add to the family.

However, the following day I noticed a change in his breathing. I thought I was just being a panicky mum, but I asked the nurse about it anyway.

When things didn't settle she sent for a paediatrician and the next thing I knew he was being whisked away to the Royal for a heart scan.

In those days you weren't allowed to travel so soon after the birth and I had to wait back at the Ulster Hospital in Dundonald. It was an agonising time - but I had no idea what was to come.

My husband, Ian, broke the news that Conor had hypoplastic left heart syndrome. A consultant later explained that this meant one of the four chambers of his heart was missing. His heart couldn't pump properly and the rest of the body couldn't cope and was essentially shutting down.

We were told there was nothing could be done. Conor would die within days.

While I understood what they were saying it didn't really register. As I held him in my arms, he looked so perfect and healthy that I couldn't imagine anything possibly happening to him.

The staff at the special care baby unit at the Ulster Hospital couldn't have been more supportive or sympathetic. They went well beyond the call of duty and I will never forget that.

But there was nothing anyone could do and three short days later my beautiful son slipped away.

Saying goodbye was horrendous. The following days and weeks are all a bit of a blur. We got through them, but I am not sure how.

We had a lovely service for Conor and buried him in Greyabbey. I remember walking into the church and seeing that small white coffin, which no parent should ever have to witness, and feeling like I had been pierced inside by a knife.

It was unbearable, but I had a lot of support from family and friends, and later that day all my UTV colleagues came back to the house and we had a 'celebration' of Conor's short life.

In the days that followed there was barely an hour that went by that I didn't think about Conor. I was overwhelmed with grief and loss.

I had a lot of guilt, too. Was it something I did or didn't do which caused this to happen? Was it my fault? But as the doctors explained, sometimes there is no explanation.

I became an over-anxious mum, too, and would barely let Fiona out of my sight. I was a mess but, thankfully, I had good friends, particularly UTV presenter Kate Smith, who was wonderful and has always been there for me.

I only really began to heal 18 months later when I was blessed with another son, Euan. And while he could never replace Conor, he helped me heal without a doubt and allowed me to cope with my pain and come to terms with things.

I was anxious during my pregnancy and in the days after he was born. He was taken to the Royal, too, but only for precautionary tests and, thankfully, he was perfectly healthy.

I talk to Euan about his big brother a lot. I think talking helps. I've also talked with other mothers and done some counselling work through the hospital.

Any parent who has been through this will tell you it is always with you. I still think about Conor all the time. Birthdays and special occasions are particularly tough, and at certain times I will find myself thinking, 'well he would have been this age by now and doing such and such a thing ...'

There is a special book in St Anne's Cathedral, Belfast, for children who have died and we have made a dedication in that, but what I would like to see is a forest planted somewhere, maybe in a National Trust Property, where parents could go and think about their child, remember them and pay tribute to them. Not everyone wants to go to a grave.

It is difficult sometimes to think that if this had happened later, perhaps Conor could have been saved. I have to take comfort from the fact that other parents now don't have to go through what I did.

That's why I have always been so supportive of Heartbeat and the work they do.

As a journalist, and more recently as features editor of UTV Live, I have had a busy life. The work/motherhood balance hasn't always been an easy one.

Euan is 12 now and Fiona is 18, but there is - and always will be - a great big hole in the family where Conor should have been.

÷Further information about Heartbeat can be obtained from Irwyn McKibbin on 07801 370297. Support groups meet throughout the province and recently the charity has donated £85,000 to buy equipment for the Clark Clinic. They have also helped provide accommodation at the hospital for parents and respite holiday accommodation for families in Newcastle.

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